This is SO amazing. Coley just fell asleep nursing up in his room and I thought I'd experiment by putting him down in his crib, fully expecting him to wake up and not want to sleep - he's not a great napper, as some of you know. Well, just goes to show me... he's still sleeping 15 minutes later!! So I have time for a quick post and update (I hope. Who knows, this may not get posted for days if I don't have time to finish it.).
On Wednesday, December 3, Coley's 3-month birthday, he had an echocardiogram. The doctors wanted to get a good image of what's going on in his heart to help determine when to do the surgery. Fortunately, no surprises were revealed to us, and our cardiologist's assessment from listening and looking at him was spot on. Coley has enough and not too much pulmonary stenosis (narrowing of the pulmonary artery as it leaves the heart and goes to the lungs) to make the pressure in the heart just right to get the blood out to the lungs without flooding them. Confusing, I know, and I'm not sure I totally follow it all myself.
It suffices to say that we still don't know when the surgery will be. The cardiologist is conferring with the surgeon about the imagery and the surgery schedule, and will set a date in the near future. There's also a possibility, if they don't have enough information from the echo, that Coley will need a catheter procedure to get more accurate measurements of the chambers and vessels and the pressure in and around his heart. I think we're still shooting for January sometime for the Glenn (at around 4 months of age), but Coley's condition is safe enough to push it back to February or even March, if he holds steady. They won't go much past then (closing in on 6 months old) to do the procedure, though.
The good news is that Coley is now up to about 14 lbs! The cardiologist said that he is the largest baby they've ever had going into the Glenn. Amazing... both the cardiologist and Coley's pediatrician made jokes about my milk being cream. It's at least whole milk... none of that 2% nonsense.
Speaking of milk, though, I can't drink it! Nor eat cheese (wanh!!), nor yogurt, etc. And no beef items, either. Coley's pediatrician thinks he may have a sensitivity to casein, a protein in dairy and beef. Apparently this is fairly common for nursing babies. We saw a few flecks of blood in one of his diapers two weeks ago and called her right away. This was her assumption, and so I cut out dairy and beef. So far, so good. No more blood, and, surprise (!), less fussiness! Casein sensitivity can cause colitis - inflamation in the intestines - must have been pretty uncomfortable. I think I can still do goat dairy, though. Good thing, because I might as well not go on living if I can't have goat cheese.
So there are the major updates... Coley's starting to stir, so I gotta run. Hope I didn't give all that info short shrift in my rush to get it all out. Just comment or email us if you want to know more!
